Echos of the years

I’m writing this blog from bed 1 on Davidson Ward in my second home at Kings College Hospital. I’ve come in tonight pre planned to have my NJ tube removed and a PEG inserted tomorrow. I’m very much hoping it’s only going to be an over night stay. Fingers crossed for no complications.

Strangely I’m in a room I’ve been in before. I shared this 2 bed bay a few years ago with a lovely young woman called Sam. She was only 26 when she died of her blood cancer leaving two small children behind. We shared 5 weeks and got to know each other intimately in this small space. She loved all the soap operas. It’s strange being here and feeling the echo of her presence all these years later. Tonight I have the space to myself.

There are so many horrible things you have to endure when you are diagnosed with MDS. I’ve had my NJ tube in since 24 July. I’ve done really well to keep the tube patent all this time. I shall be very pleased to get it off my face and not have people stare. I will miss my conversations with children though about being an astronaut.

I can’t say I’m looking forward to a hole being made in the outside of my tummy for a tube to be place directly into my stomach instead. It sounds a bit ouchy at first. I’m told once it’s healed you can still have a bath so at least I won’t smell for long. Lol.

I really hope they don’t keep me too long and that I’m on the list early. The worst thing about all these things is the amount of hanging around you have to do.

I will keep you all posted as and when I’m able to. In the meantime please pray for Sam and the family she left behind and all others struggling with blood cancers. Today is the last day of blood cancer awareness month and #makebloodcancervisible. This post is dedicated to the army of carers, partners, family and friends who give such unstinting support to those of us affected by blood cancer. You enrich my life no end and I couldn’t do it without you.

A surprising blood test

Last week I had hospital appointments on 4 days out of five days. Today I had two appointments and tomorrow I have two appointments. Yesterday I had one. So that’s 9 appointments in the last 2 weeks. It’s all go. I certainly know how to live. Lol. 

One of my results was abnormally high today and the consultant was much perplexed. I have a cholesterol of 10. Now bearing in mind that I haven’t eaten a meal since June that’s a bit surprising to say the least. I like to keep the medics on their toes but I’m not sure I like the idea of high cholesterol. Do any of my medical friends have any idea why this is a problem for me? It’s certainly not diet related. 

I’ve been thinking about all the ways my body let’s me know it’s not that happy and/or is showing signs of the struggle I’m engaged in. My big toenails are still in the process of healing after my nail fold surgery. My ankles still swell slightly but it has improved. My skin is very itchy and dry. I get pain in my muscles and joints especially my legs. I get horrible pains in my tummy that can wake me in the middle of the night and I often have an urgent need for the loo even if I’m out. I have a slightly sore throat from the NJ tube. I have sores in my mouth. I have dry eyes and dry mouth. I have regular headaches. I have zilch appetite and often feel sick. I can’t walk far. I sleep for around 10/11 hours. I am often pale to the point of translucent. I get breathless easily and I’m as deaf as a post without my hearing aids. Wow that’s some list. 

Despite all that, I struggle on and make the most of it. I’m really hoping to be able to catch up with friends and family and do some nice things. All I need is a few less hospital appointments so that I have the space needed to socialise. 

I’m very proud of Sam, Jen and who have all joined the bone marrow donor registry. As September is blood cancer awareness month I wanted to highlight the amazing gift that these 3 may give one day. Life is precious and to be able to save a life must be the ultimate buzz. I know Kaz is also looking into it. You are all stars. 

Please consider donating blood or you bone marrow. You never know who might need it next. #makebloodcancervisible #mds 

World Marrow Donor Day

Yesterday was World marrow donor day. My little skin and blister Gail was my donor and life saver.

We didn’t have it easy when we were kids and were often left to our own devices. As I was the older one my job was always to protect Gail. One day she came home to me crying because one of the local bullies had been picking on her. I came out to see if I could see him. I was eating an apple at the time. When the bully saw me he started to run. I threw my apple at him and it hit him square in the back of his head and took him off his feet. He didn’t pick on Gail again. Lol.

Gail has paid me back many times over by her wonderful and generous gift of her stem cells. The process of her becoming a donor was that she had a blood test to see if she was a match. Once it was confirmed she was compatible she then had some health checks and a talk with a dr to make sure she wasn’t under pressure to donate. After that she had to have GCSF injections for a week. These injections over stimulate the bone marrow to produce extra stem cells.

The harvesting of cells comes next. This was done by Gail being attached to a machine with cannulas in each arm. They took her blood out of one arm, separated the stem cells then gave her back the rest. She had to do this for about 5 hours on 2 consecutive days. The next day I was given the cells they collected.

It’s an amazing process to go through and incredible to think that Gail now also lives inside of me hopefully fixing all my wonky cells.

In the UK people can join the Anthony Nolan register is they are 18-30 and the DKMS register if they are up to 55. The gift of life is one of the most precious things you can give. How amazing it must feel to save a life. Please consider joining the register yourself or encouraging others to do so.

Gail you are a super star and I love you very much. Words could never express all that I feel. I hope you know how special you are! Xx

One size fits all

Today was a long and painful day. I got to Kings at around 10.30am. It was ages before they called me in and took some blood from me. What made the waiting more bearable was a lovely chat with Diana and Pete. Really nice to see your smiley faces. 

Bloods came back in the safe zone so I was taken to the catheter theatre to have my new Hickman Line. It was the same consultant I had seen last time. For those who don’t remember, what happened last time was I was laying on the operating table and all prepped when the consultant realised that the right side of my chest was occluded. In other words blocked from a previous Hickman line that went wrong. He then said as he had to tunnel across my chest from the left he needed a longer line. That meant the procedure was abandoned that day as they couldn’t find another line that was compatible with ECP. 

Today was the next appointment I was given. I turned up with my longer line. The theatre staff remembered me. When you have these lines put in you are lying flat on your back. You have to look to the right and keep your head on the side. A sterile drape is put over your chest and face and then they tent it. All you can see is the drape and the eerie light it creates. 

They then clean your chest with the coldest alcohol gel. Brrr. Next comes about 8 bee stings in the form of the local anaesthetic. Then they make a few cuts and thread a wire through from near my left shoulder to the top of the heart. The consultant was puffing and panting and he said there was a lot of scar tissue. He was putting a lot of pressure on me as he guided it over my chest. As he was doing this I suddenly experienced the most excruciating chest pain and my pulse started racing. The consultant was good and took some extra ob’s and fiddled some more with the line. Eventually the pain eased off. It was really unpleasant and gave me a glimpse of what it must be like to have a heart attack. The consultant then said that the line was too long and needed to be changed. I could’ve swung for him if I’d been able to move. I said i brought a shorter one last time and you wouldn’t do it. He said I was small and the other line may be problematic if left. They then left me for about 40mins while they tried to find a shorter line that was compatible with ECP. By the time they tracked one down I needed the bee stings all over again so they could remove the long line and replace with one that fitted better. 

While I was lying there I could feel the blood trickling down my shoulder and back. It was warm and felt weird. I ended up looking like I had a head wound. No wonder I was being stared at when I popped into M&S on the way home. 

At one point I had to say to the consultant was there an chance he could be a bit gentler. Maybe because they can’t see our faces they don’t realise how rough they are being. I also know it’s difficult when there is so much scarring to get through. 

I’m in quite a lot of pain tonight. It’s a deep internal ache. I know it won’t last long but for now I hope I can prop my self in a comfy position and get some lovely sleep. 

Back with a bang

I’m well and truly back from my holiday. It was bliss to have nearly 3 weeks without any needles or medics apart from the occasional phone call checking up on me. As you can see from the pictures, the view from my window was spectacular.

I came back to a stack of post 7 of which were letters from the hospital. There were also 3 messages on the answerphone, 2 of which were from the hospital. Do you think they missed me? Lol.

I crawled into bed at 3am Fri morning after the long journey from Holyhead. I then had to be at Guys for 3pm for Physio and 4.30pm for ECP. I was back at Guys again today for 12.30pm.

On top of all this activity my NJ tube has blocked. Sigh. So after ECP today I popped into the urgent care centre at Guys but sadly they couldn’t help. So I drove home and have been at my local A&E ever since.

I met a lovely young dr and explained all that I had tried to unblock the tube and said I was aware there was a drug that could be put down the tube to unblock it. He was good and listened to me and went off to the gastro ward to find the medication needed. It’s called Clod buster. Lol. It smells disgusting. It was funny watching him read the instructions and follow the step by step guide. Anyway he tried to squeeze the medicine in. Then it had to be left for an hour and then flushed. Sadly it didn’t work. He has now put in a second lot and again I have to wait for another hour. That takes me round to 9.15pm. He mentioned they might admit me if they can’t unblock it. I said no need as I can drink it’s just nutrition that’s a problem. Fingers crossed everyone that this dose works.

It’s amazing to think that I haven’t even unpacked fully yet and I’ve already had 3 hospital appointments and a lengthy spell in A&E. Oh the joys of living with cancer and it’s complications! Good job I’m an easy going person.

When I had my ECP yesterday the 2 nurses on were really great and worked together and managed to get 2 cannulas in with only a little bit of fiddling. Today sadly took 5 attempts and an hour before we had 2 working cannulas. I think the staff will be very pleased for me to have my new Hickman Line back in situ.

Tomorrow I’m gonna chill and do something nice because Monday I have a haematology review in the morning and go to theatre in the afternoon for my new line.

When so much time and energy is taken up with hospital appointments it can be really easy to lose yourself and just become a patient. I don’t ever want to just be a patient. I am also a partner, a mother, a grandmother, a sister, an auntie, a cousin, a niece, a friend and neighbour. I have to look after my emotional and spiritual well-being as well as my physical body. I need fun and laughter in my life and I need to know what’s going on in my family and friends lives. I never want it to be just about me. I might be frail at times but I can still listen and be alongside people.

This month is blood cancer awareness month. I dedicate this blog to all of us who struggle to live with various blood cancers but don’t want that to totally define us. Also to all of us who strive to achieve quality of life despite the obstacles that keep getting thrown in our paths. Keep going people and do something unexpected and fun. Xx

Blood cancer awareness month 2018

September is blood cancer awareness month. My cancer was so unusual at the time that it took 2 years to formally diagnose me.  Myelo Dysplastic Syndrome (MDS) was something I had never heard of. It took a while to get my head around the implications of it all. 

At first I didn’t want to tell people I had cancer. I used to say “I have an unusual blood problem” I didn’t want to be treated any differently. I have always been fiercely independent and didn’t want people treating me differently. 

Over the next 18 years I have grown close with my MDS diagnosis. I have had a transplant and now also have to deal with the horrors of Graft Verses Host Disease (GVHD). I have learned to accept that I need an extra hand sometimes and that life, at present, has to be lead at a different pace. 

Would you know what the early signs of blood cancer are? They are often non-specific and could be caused by a number of things. It’s worth checking with your GP if you are feeling any of the following: fatigued, breathless, bruising easily, night sweats, or repeat infections. 

The other amazing thing you can do is become a blood donor or go on one of the registers to become a bone marrow donor. Anthony Nolan take people aged 18-30 and Delete Blood Cancer take 30-55 year olds. If you can’t do this for ill health reasons or age then please encourage those around you to. 

My little sister Gail was my life saver. I will never be able to repay her for the gift of life she gave me. Do you want to join her and become a life saver? It’s easy to do and imagine how amazing you would feel. 

#makebloodcancervisible #bloodcancerawarenessmonth #MDS